My Nonprofit Reviews

What if you lived half your life not knowing you had a rare chromosome disorder?
I did.
I wasn’t diagnosed with a rare chromosome disorder until I was 44 years old.
I was tested after my son was diagnosed. I was astonished to learn I unknowingly passed on a rare chromosome disorder to my child.
After the initial shock, we were introduced to genetic counseling and non-profit resources for information and support.
One of the resources was Chromosome Disorder Outreach (CDO). Finding this organization has been an important lifeline. This organization helped us go from feeling “alone” to feeling “connected” to others in the world sharing the same rare chromosome disorder. CDO provides families with the opportunity to connect and share with each other. It’s amazing to learn common medical conditions that can be associated with your specific rare chromosome disorder. Answers. Answers to questions about WHY we have certain medical condition’s. And also, what potential medical conditions to be aware of. Now as I’m aging and medical conditions develop, I find myself wondering if it’s related to my rare chromosome disorder or not. This is where being a member of CDO, connecting and sharing with other families is beneficial. The work that CDO does and the resources it provides impacted families is so important.
The words and feelings I described of “rare”, “lost”, “alone” are replaced with “relief”, “connections”, “answers” and “support” after finding this wonderful non-profit; Chromosome Disorder Outreach.
THANK YOU CDO for ALL that you do for us!

CDO is an essential organization for myself and family.
When the diagnosis was fresh, this organization helped us feel connected to others. We knew we weren’t alone.
Years later, it is a comfort to know CDO is a place we can go when we have questions or need information as we continue along our lifelong journey of a chromosome disorder.
Thank you, CDO, your expertise and support is so appreciated!

This nonprofit is a wonderful group of individuals. If I have the need, I know this is a nonprofit I can turn to for information and support. My son and I share a rare chromosome disorder. While we don’t have many complicated health conditions related to the disorder, I confidently trust this nonprofit as a great resource for us if/ when needed.